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Friday, December 25, 2015

2015

A big year.

Andrew graduated high school in June and, in August, moved into Jimmy's group home.

His move was sudden and a shock to everyone's system; we hadn't planned to move him to a group home until he was 22. But a room came open in Jimmy's house, which is of course where we had hoped Andrew would live, and the system changed, so if we didn't take that spot, we wouldn't have a spot at all.

Apparently New York is now filled with aging parents living with aging developmentally disabled children ... and so far I haven't been able to figure out what, exactly, is going on.

It's possible there's another 'reform' underway, similar to deinstitutionalization; the literature we've been given to read inveighs against the horrors of developmentally developed adults having to share bedrooms in group homes. Apparently, living alone in an apartment with a succession of aides coming in and out respects human dignity; living with 6 other people in a house with aides coming in and out doesn't. That seems to be the idea.

Beyond that, the other concept seems to be that developmentally disabled adults should have homes of their own ----- funded and staffed by parents?

I can't tell. (Very odd not to be able to parse the politics of a situation you're directly involve in.)

So that's Andrew. Safe and sound, it looks like.

Now that he's settled, we know where we want to be next: down the road from the group home, in walking distance. So we're working on that.

Chris is in his senior year at NYU (imagine!) -- and, very big news, has just learned he's been accepted by NYC Teaching Fellows for next year! He found out on the way home when he checked his spam filter.

As for me, I've finished a draft of my book, and have two final exercise sets to edit and revise (Katie Beals did first drafts, thank heavens .... )

The sad news: Surfer and Abby have died, both on the day after Thanksgiving. Abby's death has hit me especially hard. She was with me all the time, often sitting directly on my feet if possible.

The happy news: I've regained my composure sufficiently to have figured out what's next, and that is a puppy from MuddyBay Retrievers.

6 comments:

This idea that developmentally disabled adults should live in their own homes with a huge (rotating) cast of care givers is utopian. In addition to the expense, there is the issue of there not being credible witnesses if abuse should occur; the social isolation; the absence of a more-experienced, more committed level of caregivers to lead the newer, more random ones; and all sorts of logistical issues. In some cases it would not even be safe for the caregiver. I think most serious programs give lip service to this idea (who knows; it probably does work in a few cases) and go on providing congregate living in homes with 5-10 people. I think the one person/one home idea springs mainly from advocates and policy proposers who know that that is what they personally would prefer, for themselves. They don't easily see things through the eyes of a developmentally disabled person, who may not (is almost definitely not) be interested in that level of putative independence.

I think that another reason for individual apartments is likely the state's liability for potential violence and conflict. Disabled adults are adults, strong enough to harm someone, but disabled, so they don't have wealth of their own; the only "deep pockets" in a group home assault case is the operator of the group home, i.e., the state. I recently heard of a case where a nursing home was being sued for wrongful death for not keeping a known-to-be-violent resident from going into another room and assaulting the occupant, who died of the injuries sustained. Based on the law, it looked like the nursing home (or its insurer) was going to be paying a large settlement.